What is a lung transplant "like"? It's like
needing major surgery you dread at first but by the time you really need
it, desperately hope will happen. In actuality, by the time you get
the call--if you are lucky enough--you won't really care what
it's going to be like, because by then it can't be any worse than what
you've already been through.

Or, from another point of view, as I told my doctors,
"Listen, I've had Periodontal surgery--nothing you can do will ever come
close to that". As it happens, it's largely true.

But as far as what actually happens after you get
the call, once the basic mechanism of getting you to the party has been
accomplished, this is what you will likely experience:

1. Upon arriving at the transplant center,
you will be delivered to a prep room on a gurney where you will receive
an IV line and a mild sedative, possibly from a technician that seems to
speak a language other than your own. Your spouse or one family member
can usually accompany you up to this point, but after this, you are wheeled
into the Operating Room alone. There, you'll be be put under general anesthesia
and possibly hooked up to a cardio-pulmonary bypass machine (depending on whether you're getting a single- or a double-lung transplant), and the operation will begin.
Your family will go to the waiting area where they will spend the next
5, 6, or 7 (or more) hours. Periodically, a doctor or nurse will
come out to update them as to how you are doing, or if the transplant will
even be performed. Often the donor organs will, upon closer inspection,
be rejected prior to transplantation. Then the operation is called
off and everybody goes home, only to again--hopefully--repeat the process
all over again when another donor organ becomes available. This is
actually a good thing, as long as the patient can withstand additional
wait (not to mention the mental anguish), since a donor organ in poor condition
will not lend itself to a successful outcome. Some patients have
gone through this process two or three times before finally becoming transplanted.
It is the mark of a talented transplant team that knows how to differentiate
between good and bad donor organs.

2. Upon completion of the surgery, you are
moved to ICU, where you eventually wake up on a ventilator and with all
kinds of chest and neck tubes and urinary catheters stuck in you.
Typically you will also have approximately 60 staples across your chest
in what is called a clamshell incision, which runs from armpit to armpit
under the nipples. On one side of the bed there will be a container
with what looks like Hawaiian Punch that drains from your chest.
On the other side there will be a container with what looks like apple
juice that drains from your urethra. You will be on a small flow
of oxygen through a nasal cannula and remain on the ventilator for a day
or two. You will have a very dry mouth. It will be all you
can do to try and ask for an ice cube or lemon-flavored swab to moisten
your mouth. There will be one nurse that amazingly, will be able
to perfectly understand your mumblings, but all others will ask you to
repeat yourself over and over again. Periodically, a nurse will come
in and administer a mechanized vibrator to your back to dislodge any mucous.
You will think of and say many hilarious things, but they will not seem
all that funny to you.

3. At some point, the ventilator will come
out and you will be better able to talk. Things will be confusing,
and you may even feel that the entire hospital is conspiring to kill you.
This is usually an illusion (kidding). You may try to, or even successfully
use the telephone to call home and tell them to come and get you right
now, because you are "getting out of there". This will pass.

4. A nurse will at some point come in and
help you out of bed and somehow get you to walk approximately 10 feet using
a giant stand-up walker on wheels. You will get back in bed, totally
exhausted, and wonder why everybody around you is so apparently happy.

5. The food will be so distasteful that you
will be nearly unable to eat. You will find that the mashed potatoes
are especially disgusting.

6. After about a week to ten days, you will
leave ICU and get a bed in a private room in the step-down unit and be
on reverse isolation in a ward with other transplant patients, possibly
even some with organs from the same donor as you. The food will start
to improve. A night nurse will be your friend as she takes the time
to explain your medications to you and help you to gradually learn to assemble
them yourself. Every day you will be dragged out of bed at 6 AM to
be weighed and a mobile X-Ray machine will be wheeled in to X-Ray you in
your bed.

7. A sub-contracting respiratory therapist
will come in dressed in a Level 4 Bio-Hazard anti-contamination costume
and administer Amphoteracin-B through a nebulizer twice or three times
a day to prevent Aspergillus infection. A physical therapist will
bother you at periodic times about pedaling on a sit-down bicycle and walking
with a medium-sized stand-up walker on wheels. An occupational therapist
will visit you with instructions on how to wash your butt while sitting
down. A psychologist will wake you up one morning and tell you she
(or he) thinks you are a prime candidate for post-transplant depression.
This will haunt you until you realize that you are so happy to be alive
that depression is the last thing on your mind. Much blood will be
taken from your veins. Days will pass.

8. You might have a wild dream one night
that will wake you up with a start in a cold sweat, wondering if you should
try to go back to sleep, for fear that it will pick up where it left off.
You will discuss it the next day with your favorite transplant coordinator,
and ask if any of the details match what she (or he) may know about the
donor's life. You will learn nothing. It will not occur again,
but you will never forget it.

9. Your transplant surgeons will stroll in
from time to time, and gradually you will realize that you are passing
into another phase of recovery and that, sadly, you won't be seeing much
more of them. You will continue to see your Pulmonologist.
There will be nurses that you will grow to love, and others you will grow
to hate. You will forget all of their names--except two or three--minutes
after they leave your room. You will beg for better-flavored drinks
and snacks. Some will bring them, others will forget.

10. After about two weeks of physical therapy
and general care, your doctors and your insurance company will conspire
to make you leave the hospital and enter an inpatient sub-acute rehab center,
unless you are of such great health that they feel they can take a chance
on sending you home (providing that your home is close to the center).
Otherwise, you will have to get an apartment near the center until they
are satisfied that you are in a position to be trusted walking, washing,
eating, taking your pills, administering IV infusions, and all the rest
that is involved in the recovery process. At this point you are two
thirds of the way there.

11. From this point on, you will administer
your own IV Gancyclovir infusions, maintain your Hickman catheter, flush
your lines, eat as much calorie-laden food as possible, and attend regular
clinic meetings where you will be given Spirometry exams and have chest
X-rays taken. This will continue for what will seem like a long,
long time. Also, you will be enrolled in an out-patient physical
therapy program where you will actually start to gain back some of the
strength you had before all of this started.

12. Eventually you will be able to sit in
a chair without a foam pad, sleep without getting up every hour-and-a-half
to urinate and then suddenly one day, you will realize that you can almost
see ahead to a time when life will be sort of normal. And during
all of this, you will be breathing room air.